Home Alone: Family Caregivers Providing Complex Chronic Care

Author/Editor: Susan C. Reinhard, Carol Levine, and Sarah Samis

Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals. To document this major shift, the United Hospital Fund and the AARP Public Policy Institute undertook the first nationally representative population-based online survey of family caregivers to determine what medical/nursing tasks they perform.

There are more than 42 million unpaid family caregivers in the United States, and of the 46 percent of family caregivers performing medical and nursing tasks, three out of four provided medication management – including administering IVs and injections – for a family member with multiple chronic physical and cognitive conditions. Further, more than a third of these caregivers providing medical and nursing tasks reported doing wound care. Other tasks included operating specialized medical equipment and monitors.

The report recommends actions including: encouraging health care professionals and providers to reassess the way they interact with caregivers, ensuring that they are well trained and prepared to perform difficult tasks, revising how caregiving tasks are labeled and identified, and including family caregivers’ needs in the development of new models of care.

The results of this study challenge the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master.

[Updated October 4, 2012, to correct an error in the percentage of family caregivers performing medication management who found it difficult because they were afraid of making a mistake and/or causing harm to their family member on page 6.]